I received my post surgical biopsy report yesterday and much to my surprise it was inconclusive. It stated that the specimen did not survive processing. Of course this was very disturbing to learn. I have since learned that this occurs for various reasons, not always within human control. I have to believe that my doctor’s initial observation of a herniated muscle causing the lump is correct. I just cannot subject myself to additional surgery right now, and continued surveillance will be vigilant of course. This is where my faith rubber hits the reality road, for sure!! My follow up appointment is in another week.
Maybe it’s just the dog days of summer, or 100* temps in July, but my fatigue continues and causes me to feel like taking a nap every day after just being awake a few hours. This is after a full 8-9 solid hours of sleep at night. More likely, it is my B-12 deficiency, a form of anemia. It is a “tired” unlike even chasing the 4 kids under age 5 that I had under foot may years ago! I can only describe it as a close 2nd to the fatigue I had during chemo….like the blood has been drained from my body. Yeah, like that. Where’s that pillow? I have closed my business for the next couple of weeks while I try catching up on outstanding orders and work on things around the house that have gotten behind.
My oncologist called last week to say that although my B-12 numbers are climbing in the right direction, they are not what they should be (at only about half the normal level) and he wants me to be re-tested in 5 weeks. I am continuing the daily Rx strength B-12 supplements. I’m hoping we can get to full levels in that time and start to feel more energetic again. August has me scheduled for a pelvic ultrasound, a mammogram and a dermatology follow up. Are we having fun yet?
Last weekend we went up to New York City to take Keith and Kelli to Broadway show, starring our long time family friend and 2011 Tony Award winner, Norbert Butz, in Catch Me If You Can. (Click on the photo, then the little arrows to the right and scroll through the rest of the photos.) What a thrill! We surprised the kids by arranging to meet Norb backstage after the show. He was so gracious to take the time to talk to Kelli about her musical interests, and she was star struck, also meeting the other lead, Aaron Tviet when she asked him to take our picture (not realizing it was HIM!)
Monday morning found us back at Walter Reed meeting with the rehab doctors for Tim’s condition. He continues to battle through the paralysis (left side) and numbness, nerve pain and limited mobility on right side. He will be seeking a 2nd opinion from a renown spinal nerve doctor at University of Virginia in the coming weeks.
Fortunately we have the boys home from college for another couple of weeks to do things around the yard and house. After August 23rd we will officially be empty nesters! We plan to try squeezing in a family beach trip in a couple of weeks and enjoy some rest on the sands in Maryland’s shores. “Til then! ~ Koryn
|Central Park, NYC|
Apparently I am! That’s what the dermatologist called to tell me today. The mole removed from my abdomen last week was determined to be Atypia, in other words, “pre-cancerous”, but the margins were clear. He wants me to be checked again in 4 months, 8 months, 12 months, then every year. (Thanks to my maternal grandmother and paternal grandfather, both of whom had numerous skin cancer lesions). The mole itself was only the size of a small pearl, but quite dark. Now I am left with what is sure to be a nasty scar, about the size of a large pea, but seeing as I have no intentions of wearing a bikini anytime soon, it is well hidden! If you really must see it, click here.
I have an appointment with my oncologist next week since the pain on my right rib cage area has not improved in almost a year and I have had continued bouts of tender swelling in my groin on that side for over a year as well. I have numerous sharp, tender “jabs” under my rib cage and towards my back each and every day. At times it is a take-your-breath-away pain, but it is brief and so I deal with it. I’ve almost become accustom to it, so much so that I have stopped all pain medications because they make me too loopy and I guess I would say that the jabs are tolerable (as much as one can stand being “slugged” in their side every day)! I’ll wait to see what tricks Dr. G may have yet left in his bag. I’m imagining the standard blood work, another scan, and another, “we can’t find anything” result but it is what cancer survivors do. It is the drill for at least 5 years, and sometimes beyond. As much as I would like to let it go, and decide once and for all that this is nothing to worry about, the fact is that I do worry and I feel very strongly that it is not normal. Fortunately for me, neither does my doctor, and he is on a mission to find it.
Summer is officially underway and next week at this time we will be graduating our last high schooler and attending college orientation soon. This same daughter plans on auditioning for American Idol in Pittsburgh later this summer as well. She can only take one parent with her. We’ll be fighting over that assignment!
The words that form this ribbon <——- are all words that describe the journey I began 18 months ago and the journey I am still on. Top on the list? Top of the ribbon- fear. Every day it tries to sneak in and consume my thoughts and steal my joy. Once again this week I treked up to see my doctor for pain in my sternum, that bone between the two sides of your chest. A new pain. She seems to believe it could be caused by the constant spasms in the chest muscle that covers my implant. Constant pulling and tugging, the cartilage between the sternum and rib cage becomes inflamed and is called costochondritis. The only treatment is pain management using anti-inflammatory drugs until the inflammation subsides. But for a breast cancer patient any pain signals that deep seated fear that the cancer could have returned. She scheduled my next mammogram for 3 weeks from now and we’ll go from there. She really believed if it were anything to “worry” about, it would have shown up on these recent scans and x-rays and mri I had. The appointment for my numbness in my back is this coming Monday with an orthopedic doctor.
We have out of town guests this week and Kelli in her school musical so the busy-ness is helping to keep me distracted. My business with wedding season and Mothers’ Day has also exploded, so I guess I don’t have time to worry too much. I have begun my counseling work Network Of Strength which helps keep my mind off my own cares and focus on someone else’s new diagnosis and getting them through an emotionally difficult time.
Having cancer has taken many things from me beyond my control. It has made me vulnerable and helpless at times. Part of the fight in cancer is to regain something I CAN control, and decide what is right for me.
I believe everything and every person God brings into my path, in this journey, is His divine intervention. There are no mistakes with God! A couple of months ago I met a dynamic woman through my kids’ high school. She is an 18 month breast cancer survivor and a shining example of strength and courage to me. A powerhouse of energy and positive attitude, I knew I immediately had to know her! The more we talked about life beyond treatment, I learned from her and other survivors, that lifestyle changes must be made to remain cancer free. No more free walk in the park, not exercising and eating whatever I wanted to!
Every study I have read links diet and exercise to lower recurrences or development of all types of cancers. Even though I have been fortunate to be able to maintian a healthy weight my whole life, and don’t struggle with high blood pressure or diabetes, which run in my family, my greastest focus NOW is to never go through cancer treatment again. Ever. What better time than NOW to seize hold of something within my control while other issues are still out of reach for me (such as getting my hair to grow FASTER)! I choose what to eat. I choose where to spend my energies and I choose who I want to become.
So today, along with my new friend, bandana on my bald head, I tried a spin (cycling) class at the local gym and guess what? The instructor is another breast cancer survivor, 8 months further ahead than me, and she has the same oncologist as I do! What are the odds of that? As I sat on the bike at the back of the room, watching her at the front, with all her enthusiasm and zest for life, tears filled my eyes as I could see light at the end of this dark tunnel of treatment. I saw that I can raise my head high and smile. I saw that I can have the body I want to have, or at least one better than what I have now, and that strength will come through hard work. I have never been one for sweat, in fact I hate exercising, not to mention PAIN! This would be a very big step for me to take on a lifestyle change like this. Even two or three times a week of walking around the block would be a huge milestone for me, especially if its hot outside! But I have to start somewhere, and meeting these two women is like an ah-ha moment for me. A motivation for change and a new beginning. Like two angels leading the way, that God placed right in my path when I needed direction.
I’m sure I’ll be barely able to walk tomorrow when I wake up, but in time I hope to feel better and love the body God has given me, glad to be alive.
Today is June 1st, 8 months since my breast cancer diagnosis. Sometimes it seems a lifetime ago and sometimes it seems like just yesterday. Some days I feel I have survived the worst of it and then some days I feel like I am still fighting. I have met many breast cancer patients and have found that some call themselves ‘survivors’ from their date of diagnosis and some from the date of their surgery. I don’t know when I will call myself a true survivor. All I know is that I don’t feel like one just yet.
Maybe that’s because I am still going through IV infusion treatment, spending the day in the chemo ward every 3 weeks, and maybe that’s because I still have very little hair at all, and my fingernails and toenails are rotting, bleeding, and falling off. ( Gross, I know, but that’s the raw truth.) I escaped to a movie theater a few days ago and got engrossed in the show, forgetting for three hours that I had breast cancer, only to go to the restroom after wards and find blood on my shirt from my bleeding fingernail. I wrap band aids around them and try to keep them on. “This part is taking too long”, I think to myself, this part of regaining my body after chemo therapy. And even the therapy I am getting now, though not as toxic as the last four and a half months, still causes me headaches and fatigue and I am scheduled for nuclear heart scans every 120 days to check for cardiomyopathy, a side effect to the drug Herceptin, which I get every 21 days.
(Tim and me, out to dinner last weekend, with his parents who came to visit from St.Louis)
On a lighter note, though, I was traveling back from California a couple of weeks ago and in the airport magazine/book store the clerk said to me, “I love your hair color! It is really nice with your brown eyes.” I smiled and then leaned over to her and said, “I have a dirty little secret to tell you”…and then I told her about my wig and breast cancer.
I thought to myself, I could say “thank you” and go about my business, or I could put a face to breast cancer and let people know that it is not your great aunt’s disease anymore. It is affecting more women than ever before, in staggering numbers and to people whom you never would have suspected. Many celebrities have hidden it from the public until now. The risk factors are becoming more widely advertised and discovered by scientists.
I don’t know what my life after breast cancer treatment will look like, but right now it includes a desire to let people know that finding a cure, though a great hope for us all, is only one piece in a very larger puzzle of finding the cause. The more I read, the more I see how our society and foods, and lifestyles play a big role. Now if I could only get myself to make some of the changes that will reduce my risk of recurrence such as daily exercise and eating a large diet of fresh fruits and vegetables! I’d better get off this computer now, and put on my walkin’ shoes!!
It’s been more than a week since I last posted. I’ve been getting ready for my trip out to visit my family in California, and the day has arrived! I will be gone today through the 20th of May.
For over a week now I have resumed most of my daily activities of running a house to include the grocery shopping, cooking, laundry and upkeep, even though I am still anemic. They checked my blood levels last week and my white cell counts are normal, so not as susceptible to infection, but the red cell count is still low, causing anemia. I was also catching up on all the back-ordered jewelry orders that had stacked up and then I put my shop on vacation mode – I plan to resume after June 1st. That has taken a lot of pressure off of me and freed up some time.
I began my “maintenence” Herceptin dose infusions last week, three times the levels I had been receiving, since they are every 3 weeks now instead of every week. Tomorrow is the first Wednesday since New Years that I have not had to be at the hospital! That, in itself, feels amazing! The only side effect I have noticed is one my doctor warned me of, and that is a constant drippy nose accompanied by scabs lining the nostrils. Hopefully those will subside with time as my body adjusts and I get back some nose hairs. I don’t go anywhere without my Kleenex!
My oncologist denied my request for a manicure, since one of the nails started lifting from the finger and was oozing. The bleeding under the nails has continued, but I went ahead and painted over them for my trip since they look pretty ugly. I just can’t have the soaking and cuticle treatment that a typical manicure includes. I am keeping them short so they don’t get caught and then pull right off – they are tender and still a little numb.
I shaved my legs for the first time in 6 months too! California is HOT already and shorts and skirts mean no covering up the stubble that is beginning to return. 🙂 Hair is starting to fill in the bald spots on my head, though just grayish colored (ugh) chickadee “fuzz” right now. I am still sporting a wig when I leave the house, and a scarf or bandanna while staying at home. I don’t think there will be much swimming pool or beach activity for me this summer!
I signed on to be a “chemo-angel” to a cancer patient just beginning her chemo treatments….a source of encouragement to someone else and a real place to help me begin recovery as I reach out to another woman affected by breast cancer. Channeling my time and energies into helping others will help me from holding my own pity party now that I am going through the post chemo “fall out”. Nobody warned me of the feelings I would have as I begin to process the emotional after effects of treatment. And in some respects I feel like I am still IN treatment until the new year, as I go once or twice a month to the chemo room for infusions. A ‘new normal’, they call it. All I can say is I just want my ‘old’ normal back, and that is a loss I must grieve over time. I appreciate your prayers to that end.
‘Til next week!